Many patients with head and neck cancer (HNC) suffer from psychological distress associated with dysfunction and/or disfigurement. Our aim was to evaluate the ratio of patients with persistence of psychological distress during hospitalization and identify the predictors of persistence or change in psychological distress among HNC patients.

We conducted a single-center longitudinal study with self-completed questionnaires. We evaluated psychological distress (the Hospital Anxiety and Depression Scale; HADS) and functional level (the Functional Assessment of Cancer Therapy–Head and Neck Scale; FACT–H&N) among patients during hospitalization at the Medical Hospital of Tokyo Medical and Dental University.

Of 160 patients, 117 (73.1%) completed the questionnaire at both admission and discharge. Some 42 (52.5%) patients reported persistent psychological distress. The physical well-being of patients with continued distress was significantly lower than that of other patients (21.7 ± 4.7, 19.4 ± 6.1, 19.5 ± 5.4; p < 0.01), and the emotional well-being of patients with continued distress was significantly lower than that in patients with no distress and reduced distress (22.3 ± 3.5, 20.5 ± 2.5; p < 0.01).

Impaired physical and emotional function appears to be associated with persistent psychological distress among HNC patients. Psychological interventions focused on relaxation, cognition, or behavior may be efficacious in preventing such persistent distress.

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Our objective was to evaluate long-term altered appearance, distress, and body image in posttreatment breast cancer patients and compare them with those of patients undergoing active treatment and with general population controls.

We conducted a cross-sectional survey between May and December of 2010. We studied 138 breast cancer patients undergoing active treatment and 128 posttreatment patients from 23 Korean hospitals and 315 age- and area-matched subjects drawn from the general population. Breast, hair, and skin changes, distress, and body image were assessed using visual analogue scales and the EORTC BR–23. Average levels of distress were compared across groups, and linear regression was utilized to identify the factors associated with body image.

Compared to active-treatment patients, posttreatment patients reported similar breast changes (6.6 vs. 6.2), hair loss (7.7 vs. 6.7), and skin changes (5.8 vs. 5.4), and both groups had significantly more severe changes than those of the general population controls (p < 0.01). For a similar level of altered appearance, however, breast cancer patients experienced significantly higher levels of distress than the general population. In multivariate analysis, patients with high altered appearance distress reported significantly poorer body image (–20.7, CI95% = –28.3 to –13.1) than patients with low distress.

Posttreatment breast cancer patients experienced similar levels of altered appearance, distress, and body-image disturbance relative to patients undergoing active treatment but significantly higher distress and poorer body image than members of the general population. Healthcare professionals should acknowledge the possible long-term effects of altered appearance among breast cancer survivors and help them to manage the associated distress and psychological consequences.

The purpose of this study was to demonstrate effectiveness of an educational training workshop using role-playing to teach medical students in Botswana to deliver bad news.

A 3-hour small group workshop for University of Botswana medical students rotating at the Princess Marina Hospital in Gaborone was developed. The curriculum included an overview of communication basics and introduction of the validated (SPIKES) protocol for breaking bad news. Education strategies included didactic lecture, handouts, role-playing cases, and open forum discussion. Pre- and posttraining surveys assessed prior exposure and approach to breaking bad news using multiple-choice questions and perception of skill about breaking bad news using a 5-point Likert scale. An objective structured clinical examination (OSCE) with a standardized breaking bad news skills assessment was conducted; scores compared two medical student classes before and after the workshop was implemented.

Forty-two medical students attended the workshop and 83% (35/42) completed the survey. Medical students reported exposure to delivering bad news on average 6.9 (SD = 13.7) times monthly, with 71% (25/35) having delivered bad news themselves without supervision. Self-perceived skill and confidence increased from 23% (8/35) to 86% (30/35) of those who reported feeling “good” or “very good” with their ability to break bad news after the workshop. Feedback after the workshop demonstrated that 100% found the SPIKES approach helpful and planned to use it in clinical practice, found role-playing helpful, and requested more sessions. Competency for delivering bad news increased from a mean score of 14/25 (56%, SD = 3.3) at baseline to 18/25 (72%, SD = 3.6) after the workshop (p = 0.0002).

This workshop was effective in increasing medical student skill and confidence in delivering bad news. Standardized role-playing communication workshops integrated into medical school curricula could be a low-cost, effective, and easily implementable strategy to improve communication skills of doctors.

Spiritual care has formed an integral part of palliative care since its inception. People with advanced illnesses, however, frequently report that their spiritual needs are not attended to by their medical care team. The present study examines and describes the impact of a spiritual care training program on practice and cultural change in our Canadian hospice.

A qualitative case study approach was adopted to gather feedback from hospice staff and volunteers using purposive sampling. In-depth interviews were conducted, transcribed, and analyzed using thematic (semantic and latent) analysis.

Our data suggest that the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in our organization. Using a program not specifically tailored to our local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests that the program had a positive impact and meaningfully benefited our hospice. “What will happen next?” was the question most frequently voiced by interviewees.

Although the program may not have been a perfect fit for our organization, its use instigated a process of cultural change that unfolds today. The present study suggests that a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions.

In Singapore, the core curriculum for end-of-life (EOL) care used in nurse training courses is limited. Only 45% of nurses indicated familiarity with inpatient palliative care. Nurses who lack skills in palliative care may develop anxiety and negative attitudes towards caring for dying patients. We explored whether a two-day, multimodal EOL care workshop could reduce nurses’ death anxiety and improve nurses’ skills, knowledge, and attitude towards palliative care.

Forty-five nurses participated in the workshop. At baseline before and at six weeks after, a 20-item knowledge-based questionnaire and the Death Attitude Profile-Revised (DAP-R) were administered. Six weeks post-workshop, in-depth interviews were conducted. We employed descriptive statistics, student paired samples t-test and inductive thematic analysis.

There was a significant improvement in nurses’ knowledge score (p < 0.01) and reduction in their death anxiety score (p < 0.01). Fear of Death (p = 0.025) and Death Avoidance (p = 0.047) sub-scores decreased significantly. However, the remaining domains such as Neutral Acceptance, Approach Acceptance, and Escape Acceptance did not show any significant difference, although Escape Acceptance showed a trend towards a reduced score (p = 0.063). After the workshop, more nurses adopted the Neutral Acceptance stance (76.2%), and none of them fell into the Fear of Death subdomain. Most nurses interviewed reported a positive change in their knowledge, attitudes, and practice even after the workshop.

The multimodal palliative care workshop was useful in improving nurses’ EOL knowledge and reducing their anxiety towards death. The positive change in nurses’ attitudes and practices were noted to be sustained for at least six weeks after the intervention.

China is home to one-fifth of the world's population. In the setting of a growing and aging population as well as the designation of palliative care access as a human right in 2013, the implementation of palliative care in China gains special importance. Palliative care education is an important precondition to ensure a nationwide access to palliative care. This systematic review details the status of under- and postgraduate palliative care education in China, examining both the students’ and physicians’ perception, knowledge, and skills in palliative care, and the available educational interventions and programs.

Four databases were searched in September 2018, using considered search terms. Titles, abstracts, and, if necessary, full texts were scanned to identify publications matching the inclusion criteria.

Nine publications were included. They revealed six findings: palliative care education is lacking in both under- and postgraduate medical education, only a few programs exist. Palliative care as a concept is well known, detailed knowledge, and practical skills are less developed. Chinese physicians consider palliative care an important field to be developed in cancer care, yet the majority of healthcare professionals are not willing to work in palliative care services. Communication should be a main emphasis in palliative care education, especially in undergraduate training. Finally, there is no highly qualified research on under- or postgraduate palliative care education in Mainland China.

These findings suggest that palliative care education in China is in demand and should be systematically integrated into medical education. Further research on the topic is urgently needed.

Music therapy has been shown to be effective for reducing anxiety and pain in people with a serious illness. Few studies have investigated the feasibility of integrating music therapy into general inpatient care of the seriously ill, including the care of diverse, multiethnic patients. This leaves a deficit in knowledge for intervention planning. This study investigated the feasibility and effectiveness of introducing music therapy for patients on 4 inpatient units in a large urban medical center. Capacitated and incapacitated patients on palliative care, transplantation, medical intensive care, and general medicine units received a single bedside session led by a music therapist.

A mixed-methods, pre-post design was used to assess clinical indicators and the acceptability and feasibility of the intervention. Multiple regression modeling was used to evaluate the effect of music therapy on anxiety, pain, pulse, and respiratory rate. Process evaluation data and qualitative analysis of observational data recorded by the music therapists were used to assess the feasibility of providing music therapy on the units and patients’ interest, receptivity, and satisfaction.

Music therapy was delivered to 150 patients over a 6-month period. Controlling for gender, age, and session length, regression modeling showed that patients reported reduced anxiety post-session. Music therapy was found to be an accessible and adaptable intervention, with patients expressing high interest, receptivity, and satisfaction.

This study found it feasible and effective to introduce bedside music therapy for seriously ill patients in a large urban medical center. Lessons learned and recommendations for future investigation are discussed.

The Family Evaluation of Hospice Care (FEHC) survey is widely employed by hospices, and several studies have examined this information to help inform and enhance end-of-life services. However, these studies have largely focused on examining relatively straightforward associations between variables and have not tested larger models that could reveal more complex effects. The present study aimed to examine the direct and mediating (i.e., via information/education, patient care, and family support) effects of demographic factors, length of stay, timing of referral, patient symptom severity, location of services, and relationship to caregiver on two outcome variables: overall satisfaction and caregiver confidence.

Surveys were collected from 3226 participants who had lost a loved one who received hospice services. Structural equation modeling was employed to examine the direct and mediating effects of the independent variables on the two outcomes of interest.

Participants reporting on racial minority patients, patients with more symptoms, and those referred too late or too early were the most likely to express some discontentment with hospice services. The information/education these individuals received was the only mediating factor significantly associated with caregiver confidence. More positive perceptions of patient care and information/education were both significantly related to greater overall satisfaction.

These findings help to (1) pinpoint those most at risk for being less satisfied with hospice, (2) identify which aspects of care may be most strongly related to overall outcomes, and (3) provide a model for examining complex associations among FEHC variables that may be employed by other researchers.

Hematopoietic stem cell transplant (HSCT) survivors may show evidence of objective cognitive impairment; however, perceived cognitive problems and their impact on quality of life are less well-understood. The purpose of this study was to explore HSCT survivors’ perceptions of cognitive impairment and its effect on daily life functioning.

Sixty-nine autologous and allogeneic HSCT survivors nine months to three years posttransplant experiencing mild survivorship problems completed a brief structured interview regarding perceived cognitive impairment since transplant. Data were coded and content analyzed. The frequency of participants reporting cognitive problems by domain and associations between reports of cognitive problems and age, depressed mood, anxiety, and health-related quality of life were examined.

Overall, 49 of the 69 participants (71%) reported cognitive impairments after transplant: 38 in memory (55%), 29 in attention and concentration (42%), and smaller numbers in other domains. There were no significant differences in problems reported by transplant type. Of the 50 participants who worked before transplant, 19 (38%) did not return to work following transplant, with 12 citing cognitive and health problems as being the reason. There were significant associations between reports of cognitive impairment and younger age (p = 0.02), depressed mood (p = 0.02), anxiety (p = 0.002), and health-related quality of life (p = 0.008).

A large proportion of survivors reported cognitive impairment following HSCT that impaired daily life functioning. Perceived cognitive impairment was associated with younger age, greater distress and reduced health-related quality of life.

Informal caregivers of palliative care patients play an essential role in the coordination of care for patients during their final phases of life. However, undertaking a caregiving role can have enduring psychological consequences for caregivers and interfere with functioning. Studies have investigated a variety of factors associated with individual differences in caregiver psychosocial outcomes, but little is known about their relative impact, and there is a need for guiding models to support research in this area.

A review of the literature was conducted on factors influencing the psychological distress and grief of caregivers. Drawing from acceptance and commitment therapy (ACT) and Stroebe and colleagues' integrative risk factor framework, we developed a process model to describe individual differences in caregiver psychological distress and grief.

The model presents caregiver psychological distress and grief as functions of death attitudes and communication about death and dying, mediated by acceptance and valued living from an ACT perspective. An outline of the empirical and theoretical underpinnings for each component in the model is provided.

The presented model is an inherently strengths-based model that is concordant with acceptance- and values- (ACT) based interventions to facilitate coping in caregivers.

The present study examined the extent to which social support (SS) availability and satisfaction could predict the extent of caregiver burden (CB) among mothers of children with Acute Lymphocytic Leukemia (ALL).

The study was a cross-sectional, descriptive-correlative study. It was conducted on a sample of 117 mothers whose children were undergoing treatment in a public hospital in Bam, Iran. The Norbeck Social Support Scale and the Caregiver Burden Scale were used to measuring study variables. The data were analyzed using Pearson's correlations, t-tests, ANOVAs, and linear regressions.

Significant correlations were observed between CB and SS availability (r = −0.499, p < 0.001), SS satisfaction (r = −0.543, p < 0.001), the age of the child with cancer (r = −0.22, p = 0.01), and duration of treatment (r = 0.336, p < 0.001). Married mothers experienced less CB than those that were widowed or divorced. Within the regression equation, SS satisfaction, SS availability, marital status, and duration of treatment were the predictors of CB.

Based on the results of the current study, mothers who have less SS, especially those who are single mothers, with younger children, and who have taken care of their child for an extended duration should be given special attention. Furthermore, it appears that there are distinct cultural variations amongst Iranian mothers which suggest that culture may impact upon SS availability. Results also suggest a need for interventions that enhance nurses' ability to provide support to caregivers and the broader family unit as a whole. Nurses in cancer care need to have psychological competencies to help family members of cancer patients especially mothers and more so those that are single mothers. As integral members of the patient care experience, nurses may be uniquely positioned to provide this needed psychosocial support.

There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences.

A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency.

In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves.

This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions.

The aim of this study was to describe the last year of life of a sample of the oldest old, focusing on care trajectories, health, social networks, and function in daily life activities.

Data originated from the NONA study, a longitudinal study of 193 individuals among the oldest old living in a Swedish municipality. During this longitudinal study, 109 participants died. Approximately one month after their death, a relative was asked to participate in a telephone interview concerning their relative's last year of life. One hundred two relatives agreed to participate.

Most of the elderly in this sample of the oldest old (74.5%) died at an institution and the relatives were mostly satisfied with the end-of-life care. The oldest old relatives estimated that the health steadily declined during the last year of life, and that there was a decline in performing of daily life activities. They also estimated that those dying in institutions had fewer social contacts than those dying in a hospital or at home.

Care at end of life for the oldest old is challenged by problems with progressive declines in ability to perform activities of daily living and health. The findings also highlight the need to support social networks at eldercare institutions.

Tending to the spiritual needs of patients has begun to be formally recognized by professional spiritual care providers, health care councils, and health delivery systems over the last 30 years. Recognition of these programs has coincided with evidence-based research on the effect of spirituality on health. Palliative care has served as a forerunner to an integrated professional spiritual care approach, recognizing the importance of addressing the spiritual needs of the dying from its inauguration within Western medicine almost 50 years ago. Oncology programs have also begun to recognize the importance of spirituality to patients along the cancer continuum, especially those who are approaching the end of life. Although standards and best practice guidelines have been established and incorporated into practice, little is known about the actual factors affecting the practice of spiritual care programs or professional chaplains working within an oncology setting.

Participant observation and interactive interviews occurred at five cancer programs after we conducted a literature search.

This study identified underlying organizational challenges, cultural and professional issues, academic program development challenges, administrative duties, and therapeutic interventions that determined the success of oncology spiritual care programs in practice.

Although spiritual care services have developed as a profession and become recognized as a service within oncology and palliative care, organizational and operational issues were underrecognized yet significant factors in the success of oncology spiritual care programs. Spiritual care programs that were centrally located within the cancer care center, reported and provided guidance to senior leaders, reflected a multifaith approach, and had an academic role were better resourced, utilized more frequently, and seen to be integral members of an interdisciplinary care team than those services who did not reflect these characteristics.

Consistent use of imatinib is critical for treatment success in chronic myeloid leukemia, yet perfect adherence to the prescribed clinical regimen is reported to be as low as 14%. This study aimed to understand patients' experiences of chronic myeloid leukemia with a qualitative approach, including identified facilitators and barriers to adherence, drawing on patients' and health professionals' perspectives, recording comments made by patients and health professionals involved with the same treatment team.

We recruited patients with chronic myeloid leukemia prescribed imatinib therapy and health professionals involved in their treatment from a specialized cancer center. Semi-structured qualitative interviews were recorded, transcribed, and manually analyzed using interpretive phenomenological analysis. Recruitment ceased upon saturation, with 16 patients and 10 health professionals (hematologists n = 4, nurses n = 3, pharmacists n = 3).

Twelve patients reported at least one instance of nonadherence. Reasons for unintentional nonadherence included forgetfulness related to variations of routine and doctor–patient communication issues. Reasons for intentional nonadherence included desires to reduce dose-dependent side effects and insufficient support. Patients who reported higher nonadherence rates felt complacent following periods of sustained disease control or had received conflicting advice regarding nonadherence. Health professionals had difficulty in accurately evaluating medication adherence due to a lack of reliable measures, utilizing patient self-report and manifestations of suboptimal disease control to guide assessments.

Adherence issues persist throughout the course of treatment. While high patient-reported nonadherence rates were recorded, health professionals were often unaware of the complex causes, compounded by an inadequacy of adherence assessment tools. Some patients reported nonadherence events because of insufficient education or lack of access to prompt medical guidance. These issues should be addressed to improve clinical practice.

The determinates of economic burden in lung cancer caregivers are poorly understood. Of particular interest is the role patient symptoms play in caregiver economic burden. Guided by a stress process conceptual framework, this study examined the predictors of economic burden reported by lung cancer spousal caregivers. Our study focused on the pathway of contextual and stressor variables leading to economic burden in lung cancer caregivers.

Relying on survey data from 138 spouses, structural equation modeling was employed to examine the determinants of economic burden measured using the Family Impact Survey. Contextual variables included age, gender, education, and income; and stressor variables included patient physical and mental symptoms, as well as number of children in the home.

A significant indirect path between age and economic distress through patient symptoms (p = 0.05) indicates younger spouses providing care for patients with more symptoms and reporting greater economic burden. Direct effects between contextual variables and economic burden revealed that caregivers with less education (p = 0.02) and those with more children at home (p = 0.01) reported more adverse economic outcomes.

Numerous factors impact spousal caregivers' economic burden, including the presence of children at home, being a younger caregiver, and lower educational attainment by caregivers. Moreover, the direct effects between age and economic burden were not significant, supporting the clear role patient symptoms play in the path to economic burden in spousal caregivers. These results underscore the need for healthcare providers to address psychosocial factors when dealing with patients and families with lung cancer. Specifically, the results highlight the importance of addressing patient symptoms early before they threaten the family's economic well-being.